My Week of Terror and Insight, Wonderment and Miracles, Part I

19072011

My hospital monkey -- the one Theo has named "Shiny" -- a gift from my friend James Mettert. Photo by Amy Rauch Neilson.

I have a lot to share with you — physically, medically, mentally, and spiritually — and there’s no way it’s going to fit into one blog post. You’re not going to believe all that happened last week. People kept saying, “Hey, more fodder for your book.”

My reply? “You mean my anthology?” Seriously, the sheer volume of information and story is becoming mind-boggling. So, this week (I’m being optimistic; it could take longer), it’s a series. Today is Part I.

I’m sure I need not tell you that last week was terror-filled. I can tell you that until the moment that I walked into the ER — on my doctor’s orders — and was assessed, I had no idea how very sick I was. That was Monday. Let’s back up a second.

On Saturday evening, as I was changing out of my bathing suit following an afternoon at the pool with my sister, I noticed what looked to be nothing more than an ingrown hair in my groin area. This is not headline news. All I remember thinking was, “Darn it! I hate those things!”

Saturday night, I came down with a slight fever and chills. 100.3 or thereabouts, a number that I recall Theo’s pediatrician telling me is really clinically the lowest bar of a fever. So, I took some Motrin and went to bed. Sunday, I awoke, more tired than usual, but fever-free. The area on my groin, however, had begun to grow and swell and a black, shiny center appeared. What the heck? I thought. I decided to call my oncologist Monday, one of the days that she is in clinic, and ask her to squeeze me in and take a peek.

By Sunday night, though, my groin was very swollen and the sore in the center was getting bigger, too. I spiked a fever of 101.5, but again, with Motrin, it went down and I went to bed with a Note to Self: Call Doctor First Thing A.M.

Which I did. And when the nurse heard my description, she said, “You need to go to the ER, immediately!” Don drove directly from work, picked me up, and off we went. I had been feeling so well Monday morning that quite honestly, I was sitting at my desk, working, when I talked to the nurse. Again, no fever; I had no idea the danger I was in.

By the time we got to the ER and back to an examining room, my fever had spiked to 102.5. The ER docs were in a panic. The One In Charge came to see me and said she feared a blood infection. “This is very serious,” she said. I was getting very scared, as was Don.

“But you will be able to make me better, right?” I asked nervously.

“We hope so,” is all she said.

They immediately started an IV and began pumping me full of a huge bag of an antibiotic I’d never before heard of: Vancomycin. Apparently, Vanc is the Big Guns, saved for patients like me whose life may be on the line. I was in the ER for hour upon hour, with no way to communicate to the outside world (my family and close friends were terrified) except through my blog/iPad. I learned long ago that once you go into the ER, cell phones cease to work, communication becomes very difficult. It wasn’t until I reached my hospital room late in the day that things slowed down enough for Don to be able to reach out to our closest circle with an update.

It was a long, nerve-wracking day for all of us.

I learned something — well, a lot of somethings — that day, the biggest of which is about chemo patients and fevers. I’ve been operating for 40 years from the perspective of a healthy person, and a healthy person doesn’t run to the ER for a low-grade fever. But I need to operate from the part of my brain that is the cancer patient. Fevers (how did I miss this along the way?!) are a very big deal in chemo patients. Especially those whose white blood cell counts are dragging along the basement floor.

I didn’t know. I didn’t know for so many reasons. Because the information about chemo and fevers had somehow eluded me. Because over the weekend, I’d also been taking a series of Neupogen shots to boost my counts, and when I got pain and felt yucky, I attributed it to the shots. It’s not unusual to not feel well when you’re shooting yourself with Neupogen every day for five days.

But what I do know now I want to shout to every chemo patient and every friend and family member of a chemo patient everywhere:

If you are in active chemo treatment and you get a fever, call your doctor and go to the Emergency Room.

My doctor told me that 6 – 12 hours of a delay in receiving the antibiotic treatment I needed could have made all the difference. I can’t bring myself to say it; you’ll need to read between the lines.

Second thing to know: When a chemo patient has a fever, add two to three degrees to what the thermometer is registering. That’s the chemo patient’s true fever.

Now, with this knowledge, scroll back up to the numbers I saw on the thermometer, and you’ll see — as I shockingly later realized — what my fever really was.

When I was out of danger, Don and I had this conversation:

“Maybe, just maybe, you were meant to go through this so you could alert chemo patients everywhere,” he said. “Not that I would ever, ever want you to be the test pilot. But perhaps somewhere, out there, your experience will save the life of another Mommy going through chemo, one who has a beloved little boy or girl waiting at home for Mommy to get better, just like you.”

Amy – you are and Don are so right… it may have happened to you this way in order for you to help others but it should not have. All of Kyle’s doctor’s and nurses were very adament, reminding us every time we saw them, any fever over 100.5 go immediately and directly to the ER, call the doc on the way. We spent many of nights in the ER as well….. my friend Robin had a fever last week too and she is now in ICU battling an infection that started in her port …. please please make sure you watch yourself, while you want to be a teacher, no hero’s necessary, we all need you here. Keep up the good fight!

Wow. So glad you’re here to tell your story! To save another life or to write an amazing blog and publish a powerful book will be invaluable bonuses. To live your life another day, another week, another month, another year, another decade or two or three…is worth celebrating. You do help us all to appreciate every day, Amy! Thank you for taking the time to share yourself with all of us!

You are an incredible messenger for others. I am grateful you have a vehicle to help others. With that said, I do so wish you did not have to go through this. I wish I could take it all away from you. But, I am grateful that you have such a loving family and a host of wonderful friends to bolster you when you need it. You are there and have been there for so many of us, let us hold you up now whether it be through actions, words, or prayer.

It feels like an amazing honor and blessing from above, Bob. God blessed me with talent and the amazing ability to continúe to write throughout my chemo treatments, which I find simply amazing. I only hope that someday wayyyyy down the road, when He calls me home, that He will say, “Well done, my loyal and faithful servant.”

Wow whee woman! I am so thankful you are home and doing so much better! Thank You Lord for Amy…Thank you for the fever info, I don’t believe I had that hammered into my brain while I went through chemo–if I do, I don’t remember! Chemo made me throw up and sent me to the hospital more than I care to recall…
Great info, and yes, I agree, it could certainly save someone else’s life!
Prayers still

“We hope so.” Amy!!! She actually said that? Not, “We’ll do our best.” I’m appalled. Wow! How terrifying for you. I’m sorry that some of my fellow nurses have such a terrible bedside manner. You poor thing!